The CHC Podcast: Congenital Heart Chronicles

(00:00:00) Welcome And Why Heart Camps Matter (00:02:50) Beat Retreat Begins For Adults (00:03:52) Camp Life Plus Anonymous Q&A (00:05:53) Camp Meridian For Kids And Teens (00:09:15) Accessibility And Self Advocacy Skills (00:12:56) Building Trust With Medical Volunteers (00:14:09) Funding And Staffing Reality Checks (00:17:27) A Transplant Hike Success Story (00:21:44) Mental Health And Feeling L...

(00:00:00) Welcome And Meet The Panel (00:03:12) The First Appointment Shock (00:06:39) Dismissed Symptoms And Second Opinions (00:08:16) Fight Or Flight And Family Pressure (00:12:01) How To Prepare For The Visit (00:15:47) Listener Stories And Finding Agency (00:18:08) Partners As Advocates And Witnesses (00:21:14) Navigating The New Normal Daily (00:23:16) Valve Choices Insurance And Tradeoffs...

(00:00:00) Introductions And Stroke Risk In CHD (00:03:40) What The First Symptoms Felt Like (00:10:09) Stroke Watch Meds And Follow Up (00:12:21) The Surprising Aftereffects Of Stroke (00:17:27) Listen To Your Body And Advocate (00:24:27) Audience Q&A Real World Stories (00:30:40) Talking About Risk Without Fear (00:36:24) Sensory Overload Memory And Identity (00:46:36) Retraining Movement And Li...

(00:00:00) A Lifelong Patient’s Reality (00:01:16) What Triggers Pre-Op Anxiety (00:04:10) Frank’s OR Calm And Clear Words (00:09:05) Hypnotic Rapport And Familiar Voices (00:14:45) Music Therapy Tools That Work (00:24:25) Therapy Dogs And Instant Relief (00:31:05) Regulation Biology Oxytocin And Stress (00:38:35) Breathing Cues Control And Consent (00:45:00) Listener Stories Trauma And Agency (00...

(00:00:00) Welcome! (00:02:06) A Heart Dad Chooses Hope (00:04:14) Demi's Miracle Through Music (00:08:23) Coping with Trauma Through Faith (00:11:48) Why Men's Mental Health Matters (00:15:11) CHD Resources and Listener Email (00:16:02) Community Questions on Resilience (00:18:58) Parenting From Across the Country (00:26:04) Gratitude Survivor Guilt Therapy (00:31:15) How to Support "Tested Love"...

In the first episode of Season 4, Anna Jaworski announces that The CHC Podcast: Congenital Heart Conversations has been reintroduced as Congenital Heart Chronicles after listener voting. This reflects the show’s focus on lived-experience stories and improved discoverability. Anna is joined on video by core volunteers Annie Ulchak (hypoplastic left heart syndrome Fontan patient), Ayrton Beatty (ber...

(00:00:00) Introduction and Episode Overview (00:00:17) Meet the Hosts and Co-Producer (00:01:04) Introducing Today's Guests (00:03:34) Misconceptions About Hospice Care (00:06:14) Psychological Perspectives on Hospice (00:09:32) Palliative Care for Children (00:17:59) Communicating with Children About Death (00:22:19) Balancing Emotional, Spiritual, and Physical Needs (00:24:30) Changing Society'...

In this powerful episode of The CHC Podcast: Congenital Heart Conversations, host Anna Jaworski and co-host Ayrton Beatty honor Trans Awareness Month by delving into the intersection of congenital heart defects (CHD) and trans identities. Featuring heartfelt discussions with three unique guests—Hope Jaworski, Helen, and Kai Ayscue—the episode sheds light on the challenges faced by those living wit...

In the 10th episode of season three of The CHC Podcast: Congenital Heart Conversations, host Anna Jaworski and co-host Ayrton Beatty discuss the importance of understanding CPR and sudden cardiac arrest. Guests Ben Weisbuch, a survivor of 135 sudden cardiac arrests and founder of the Heart Hope Foundation, and Dr. John Rogers, a cardiologist specializing in heart rhythm disorders and advocate for...

In this episode of The CHC Podcast: Congenital Heart Conversations, co-hosts Annie Ulchak and Ayrton Beatty discuss the significance of World Heart Day for the congenital heart defect (CHD) community. Featuring inspiring interviews with Raadhiyah Matthews and Belen Blanton, founders of Brave Little Hearts South Africa and Little Star of Bethlehem respectively, the episode explores their life's wor...

In this episode of 'The CHC Podcast Congenital Heart Conversations,' host Anna Jaworski, a heart mom to an adult with a single ventricle heart, is joined by her co-host Nicholle Bilodeau, who was born with a bicuspid aortic valve. The episode explores the unique challenges faced by individuals living with congenital heart disease (CHD) who are also married.   Two couples, Jason and Jen Crutchley,...

In this episode of The CHC Podcast: Congenital Heart Conversations, co-hosts Annie Ulchak and Ayrton Beatty tackle the complexities of living with congenital heart disease combined with other rare conditions. Special guests Hope Simmons, Scott Salvaggio, and Julia Mayfield share their personal stories and the unique challenges they face, from hospitalizations and multiple diagnoses to self-advocac...

(00:00:00) How Fathers Navigate the World of Congenital Heart Defects (00:10:58) Advice for CHD Fathers Fatherhood transforms when your child has a congenital heart defect—or when you're a heart warrior becoming a dad yourself. This powerful episode brings together fathers from across the CHD spectrum to share their journeys of strength, vulnerability, and unexpected wisdom. Shaun Jones takes us t...

In the 29th episode of The CHC Podcast, host Anna Jaworski, a heart mom to an adult with a single ventricle heart, and co-host Annie Ulchak, along with co-producers Nicholle Bilodeau and Guy Simkhay, discuss family planning choices for adults born with critical congenital heart defects (CHD). The episode features guests Amy Erhart and Meagan Houpt, both born with Hypoplastic Left Heart Syndrome (H...

In this episode of The CHC Podcast: Congenital Heart Conversations, co-hosts Jason Crutchley and Jess Cowin, delve into the complex lives of multiple transplant recipients. Guests Krysta Falloon and Chuck Estrada share their poignant journeys through heart transplants necessitated by congenital conditions, providing a raw look at the ongoing challenges faced post-transplant. The discussion touches...

(00:00:00) Introduction and Host Welcome (00:00:42) Meet the Co-Hosts and Panelists (00:02:23) Discussion on Disclosing Heart Conditions to Employers (00:05:20) Accommodations and Modifications in the Workplace (00:09:46) Insurance Benefits for CHD Employees (00:12:20) Networking and Job Search Tips (00:14:07) Interviewing Etiquette and Legalities (00:19:43) Audience and Q & A Session (00:29:58) P...

What if your personal journey with a congenital heart defect could shape a meaningful career in healthcare? Join us as we explore this compelling intersection of life experience and professional aspiration. Our guests, including Lorrie Hill, Christy Stillman, and Roslyn Rivera, share their remarkable transitions from CHD patients to healthcare professionals. Their stories illustrate not just the r...

The CHC Podcast: Congenital Heart Conversations has reached a remarkable milestone with its 25th episode, and the team is bursting with excitement and gratitude. What started as a simple idea has blossomed into a powerful community platform that connects, supports, and empowers families touched by congenital heart defects. At the heart of this podcast is a passionate team driven by personal experi...

Imagine having a heart condition and facing the daunting task of end-of-life planning—this is the reality that Ayrton Beatty, Megan Tones, and John Latsha bravely discuss on our latest CHC Podcast: Congenital Heart Conversations episode. Join us as John shares his compelling journey living with tetralogy of Fallot and the life-saving role of his implantable cardioverter device (ICD). We delve into...

Could you imagine mountain biking and suddenly facing a life-altering heart event? That's just part of Boots Knighton's gripping story, one of the incredible journeys we explore in this episode. Together with Nicholle Bilodeau and Rachael Gott, we uncover the unique experiences of those who’ve faced late diagnoses of congenital heart defects. From Boots’ heart attack that led to open-heart surgery...

What if caring for someone else starts with caring for yourself? Join us in a heartfelt episode as we promise to uncover the often-ignored side of caregiving in the Congenital Heart Defect (CHD) community: the self-care of the caregivers. Our engaging conversation features insights from Roseanne Franco, a dedicated heart parent, and Mark DeRoo, who reveals how he and his wife Michelle turned the s...

In the latest episode of the CHC Podcast: Congenital Heart Conversations, hosts Anna Jaworski and Annie Ulchak discuss the experiences of living with congenital heart disease (CHD) as adults, focusing on those who have had zero or only one open-heart surgery. Panelists Amy Erhart, Ben Johnson, and Michelle DeRoo share their personal stories, childhood experiences, adaptations, and medical journeys...

In this episode of The CHC Podcast, hosts Anna Jaworski and Ayrton Beatty discuss the emotional and life-changing impacts heart transplants have on the siblings of heart warriors. Joined by a special panel of guests, Roy Simkhay, Michelle Steltzer, Stephen Guerin, and Amy Cowin, they explore personal stories, challenges, and the deep connections forged through the shared experiences of managing co...

Parents of children with congenital heart defects may worry that their afflicted child's siblings will have a rough go of things considering the hospitalizations, doctor's appointments, therapy treatments, and more. They may worry that siblings will resent the extra time they need to spend with their medically fragile children. This episode features four adults who grew up with a brother or a sist...

Ever wondered how congenital heart disease (CHD) and heart rhythm disorders intertwine? Join us for a compelling episode where Dr. Samuel Asivatham (Dr. Sam) from the Mayo Clinic, volunteer Ayrton Beatty, and CRNA Frank Jaworski share their invaluable insights. Dr. Asivatham takes us through the latest in managing fast and slow heart rhythms, including cutting-edge procedures like ablation and def...